My first experience with illness in literature was through the story of Stacey McGill — the blonde, preternaturally hip New Yorker with Type 1 diabetes featured in Ann M. Martin’s series “The Baby-Sitters Club.” I was eight years old, and I read the passages about how Stacey wet the bed during a sleepover with wide-eyed amazement. Her best friend Laine shrieked and ran for the shower, leaving a urine-soaked Stacey defenseless and alone in front of a high court of private school eleven-year-olds. The relationship deteriorated quickly after the incident. Stacey was ill, and ashamed; Laine was a gossip and a middle-school social climber. With bedwetting and chronic disease now in play, the friendship was never going to work.
Two decades later, and three days after I was diagnosed with Type 1 diabetes, I woke up in my own pool of urine. “I’m just like Stacey,” I sighed as I pulled myself up to begin changing the sheets. I remember thinking it was a pity the diabetes plot point hadn’t gone much beyond the sleepover mishap and one blood sugar emergency in which Stacey wound up in the hospital. I could have used some relatable feedback to navigate my sudden onset identity as a 32-year-old bedwetter.
When the first trailer for the Justin Baldoni-directed film “Five Feet Apart” debuted at the end of last year, my groan was swift and guttural. A YA novel of the same name also appeared (the idea for the screenplay had come first, making the book a teaser of sorts). The film's premise is vaguely familiar — two teens burdened with cystic fibrosis, a devastating, incurable illness that affects the lungs — meet cute during treatment at the hospital, do their best to keep things platonic, but soon (at warp speed, really) fall hopelessly, irrevocably in love.
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CF patients are generally asked to keep a minimum of six feet apart from each other to mitigate cross-infection. The title of the movie indicates how its leading lovebirds took creative license with this medical best practice, all in the name of their newly ignited, forever flaming bond. Martin’s diabetic wasn’t necessarily nuanced or buoyant, but at least Stacey wasn’t forgoing insulin injections in a solidarity pact with the boy next door.
I don’t have cystic fibrosis. But what I do have, and what I suspect was the driving force behind my instinctive eye roll, is sick-lit fatigue.
I don’t have cystic fibrosis. But what I do have, and what I suspect was the driving force behind my instinctive eye roll, is 'sick-lit' fatigue. Although I love “Five Feet Apart’s” leads, Haley Lu Richardson and Cole Sprouse, my admiration is not enough to compensate for an emotional allergy to the notion that a chronic, complicated illness is the appropriate vehicle for a teenage, ride-or-die love story. Yes, I cried during “A Fault In Our Stars” (didn’t everyone?), arguably the seminal film of the “like Romeo and Juliet, but with diseases” genre that’s emerged more notably in the past decade. The “Stars’” twosome had teen cancer. I watched “Me Before You” with morbid fascination (paralysis) but opted out of “Everything, Everything” (just an overprotective mother, it turns out).
In a "Today" interview, Baldoni (of “Jane The Virgin” reputation) explained that while working on an earlier documentary series about chronic illness, he’d met a young woman named Claire Wineland with cystic fibrosis. He was so touched by her life and energy that he decided to make a film bringing awareness to what it’s like to live with the condition. Wineland was an integral consultant on the film, meeting with Richardson and advising how to realistically stage the production’s hospital rooms. She’d been putting her voice and story before an audience since she was 14, sharing openly, selflessly about life with CF — the pain, the process, the terror — in hopes of making others living with it feel less alone. Wineland died of complications from a stroke one week after her lung transplant, in September of 2018.
But even with the weight and poignancy of Wineland’s influence, “Five Feet Apart” mostly delivers escapist romance with dated tropes. Stella, ever practical, is the diligent good girl, tracking her medications in soothing rows of colorful plastic and crossing items off her to-do list with flourish. “Contemplate the afterlife.” Check! Enter Sprouse’s brooding dreamboat Will Newman — he of witty quips and a perennial shrug. He is every bit the raven-haired bad boy Stella’s heart didn’t know she needed, and also a CF patient. Stella all but spells it out for us in the trailer: “You’re the kind of guy that ignores that rules ‘cause it makes you feel in control.”
Whatever your feelings about depictions of terminal teen romance, the onscreen rendering of the disease has been sanitized and polished. The leads cough when it’s convenient for a scene yet display a remarkable amount of consistent energy. Like other movie illnesses, CF has been stripped of its truest ugliness for onscreen palatability. An opportunity to show more of a real, flawed experience has been missed.
Like other movie illnesses, CF has been stripped of its truest ugliness for onscreen palatability. An opportunity to show more of a real, flawed experience has been missed.
I occasionally wonder what the “Baby-Sitter Club’s” Stacey McGill would be up to now, and if she too, would spend as much time on the phone with the insurance company, wanting to know why certain parts of her continuous glucose monitoring system were covered last month but not the next. Being diabetic makes you more prone to infections, and I recently spent four days in the isolation ward of a hospital with C. diff. Visitors were required to put on gowns and gloves before entering the room, no touching allowed. Given that C. diff is a highly infectious — and, in my experience, very violent — diarrheal illness, no visitor, including my boyfriend Sam, dared go anywhere near violating those safety precautions.
Watching “Five Feet Apart,” I tried to reimagine my own hospital stay as produced by Hollywood screenwriters. I envision myself re-emerging from the bathroom — again. Sam raises his eyebrows adorably: “What do you say we unhook that IV and go get some pizza?” This was as far as I got without gagging. Cornball dialogue aside, the thought of subjecting my traumatized bowels to dairy, or to a distance of more than five feet apart from the nearest toilet, was the true reality check here. It is this same unglamourous, inconvenient sense of responsibility that keeps me changing my insulin pump every three days. I want to live recklessly and problem free, but what a beautiful, ordinary, imperfect gift it is to live at all.
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In reality, Sam remained in a uncomfortable chair during his trips to my hospital room, gowned and gloved and several feet from the bed. When Saturday evening rolled around, we watched “Blockers” on my computer and he’d pause it when I got up to wheel my IV into the bathroom. Then I’d settle back in among the tubes and beeps and we’d smile at each other over the bed rails. “Date night!”
Prior to the film’s release, the Cystic Fibrosis Foundation posted an announcement that while not involved with “Five Feet Apart”, they were “hopeful that the movie will be a positive opportunity to increase awareness of CF and the challenges people with CF face living with their disease.” And on a basic level, it is. But for the sake of all people living with the illness, I hope this fictional story is the portal through which real ones emerge.